Restless Legs Syndrome
Restless legs syndrome causes uncomfortable feelings in your legs. As a result, you have an urge to move your legs which gives temporary relief. Symptoms come on when resting and are worse at the end of the day. No treatment may be needed if symptoms are mild. Medication can ease symptoms if the condition is distressing.
What is restless legs syndrome (RLS)?
RLS is sometimes called Willis-Ekbom disease after the doctors who first described it. It is a condition where you have an urge to move your legs. This is usually caused by an uncomfortable or unpleasant feeling in the legs.
What are the symptoms of restless legs syndrome (RLS)?
Many people with RLS find it difficult to describe the feeling that they get in their legs. It may be like a crawling sensation, or like an electric feeling, or like toothache, or like water running down your leg, or like itchy bones or just fidgety, jumpy or twitchy legs, or just uncomfortable. Some people describe a deep painful feeling in their legs. The unpleasant feelings make you have an urge to move. Typically, when the unpleasant feelings occur they occur every 10-60 seconds and so you become quite restless.
Typically, the symptoms:
- Develop when you are resting - particularly when you are sitting down or lying in bed. They tend to be worse if you are in a confined space such as in a cinema seat.
- Are usually worse in the evening. In many people they only occur in the evening, especially when trying to get to sleep. The symptoms can make it difficult to get to sleep. This can have a knock-on effect of causing poor sleep, and tiredness the next day.
- Are usually eased briefly by moving, walking, massaging or stretching the legs. However, the symptoms tend to return shortly after resting again.
- Usually affect both legs. Occasionally, the arms are affected too.
About 9 in 10 people with RLS also have sudden jerks (involuntary movements) of their legs when they are asleep. This is called periodic limb movements of sleep (PLMS). These movements can wake you up (and/or your partner). Some jerks may also occur when you are awake but resting.
The severity of symptoms can vary from a mild restlessness of the legs on some evenings, to a distressing problem that occurs every evening and night which regularly disturbs sleep. Many people fall somewhere in between these extremes. If you have moderate or severe symptoms it may lead to lack of sleep (insomnia), anxiety and depression.
In addition to the unpleasant symptoms when they occur, many people with RLS become persistently tired. This is due to the symptoms of restlessness and/or PLMS that can cause regular disturbed nights' sleep. This can have a knock-on effect of causing daytime tiredness due to lack of sleep.
Who develops restless legs syndrome (RLS)?
About 2-4 adults in 100 have some degree of RLS. It can affect anyone and can first develop at any age. It is more common as you become older, however. Women are affected twice as much as men.
What causes restless legs syndrome (RLS)?
The cause is not known in most cases
This is called primary or idiopathic RLS. (Idiopathic means of unknown cause.) Symptoms tend to become slowly worse over the years. It is thought that the cause may be a slight lack of, or imbalance of, some brain chemicals (neurotransmitters), especially one called dopamine. It is not known why this should occur. There may be some genetic factor, as primary RLS runs in some families.
Symptoms of RLS can develop as a complication of certain other conditions. For example:
- Pregnancy. About 1 in 5 pregnant women develop RLS during pregnancy (especially in the later part of pregnancy). Symptoms often go away after a woman has given birth.
- Lack of iron (iron deficiency) - which can cause anaemia. If this is the cause then the symptoms of RLS usually go if you take iron tablets.
- As a side-effect of some medicines. For example, it occurs in some people who take antidepressants, antipsychotic medicines, beta-blockers, lithium, prochlorperazine or metoclopramide.
- As a symptom of some other conditions - for example, severe kidney disease, Parkinson's disease, diabetes, and underactive thyroid.
How is restless legs syndrome (RLS) diagnosed? Do I need any tests?
A doctor will usually make the diagnosis from the typical symptoms. There is no test to prove the diagnosis. A doctor may do some tests to rule out a secondary cause. For example, you would normally have a blood test to check for a lack of iron and to rule out kidney disease.
What is the treatment for restless legs syndrome (RLS)?
Treatment for secondary RLS is to treat the underlying cause, such as iron deficiency, etc. Perhaps a change of medication may be advised if a side-effect from a medicine is thought to be responsible. However, most people with RLS have primary RLS.
For primary RLS, if symptoms are mild or infrequent then no treatment may be needed or wanted. Many people are reassured that they have primary RLS and not something more serious. (Some people with RLS fear that they have a serious neurological disorder.) If the symptoms are troublesome then one or more of the following may be advised.
- Simple distractions, such as reading or watching TV, may help if symptoms are mild.
- Sleep hygiene to help improve your sleep patterns. This means:
- Try to get into a regular bedtime routine of going to bed and getting up at the same time each day.
- Do not nap - especially in the evenings.
- Take some exercise during the day (but not near bedtime).
- Avoid drinks that contain caffeine (a stimulant) before bedtime.
- Try to relax before going to bed. A relaxing warm bath may help.
- A trial without caffeine or alcohol altogether. (Caffeine or alcohol may make symptoms worse.) Reduce or cut out any drinks that contain caffeine, such as tea, coffee and cola. Also limit, or cut out, alcohol. Try this for a couple of weeks or so to see if symptoms improve. If symptoms do improve, you could then experiment to see what level of caffeine or alcohol causes symptoms. For example, you may not need to cut these things out completely but just take less than you were used to.
- Sensitivities vary from person to person and other factors that may occasionally aggravate the symptoms of RLS include salt or chocolate.
- Moderate regular exercise is thought possibly to be beneficial. Results from studies are inconclusive.
- During an episode of uncomfortable restless legs, it may help to walk about. Massaging the legs or stretching them may also help.
If symptoms are not helped much by the above then your doctor may suggest medication.
Dopamine agonists are the most commonly used medicines to treat RLS. There are various types and brands. Dopamine agonists in effect top up a low level of dopamine which is thought to be lacking in people with RLS. Dopamine agonist medicines used to treat RLS include pramipexole, ropinirole and rotigotine. There is a good chance that symptoms will go or greatly reduce in severity if you take one of these medicines.
As with any medication, the benefit of treatment has to be weighed against the possible side-effects of treatment. The most common side-effects of these medicines are feeling sick (nausea), light-headedness, tiredness and difficulty with sleep. However, many people do not experience any side-effects, or they are mild, and the side-effects often go away with continued use.
Most treatments cannot be used for a very long time. This is because they tend to stop working after a while and you need ever-increasing doses. Also, with the dopamine agonists, after a time, symptoms can suddenly become much worse. If this is the case, you will need to stop or change your medication.
What is the outlook (prognosis)?
The outlook varies. In some people, the problem gradually becomes worse. It may also lead to other problems, such as a less good quality of life, insomnia, anxiety or depression. In others, however, it stays much the same without becoming worse or better. In some people symptoms improve of their own accord, or there are long periods of time with no symptoms. If restless legs syndrome (RLS) is due to another condition (secondary RLS) then it will often improve once the cause has been treated.
Further reading & references
- Leschziner G, Gringras P; Restless legs syndrome. BMJ. 2012 May 23;344:e3056. doi: 10.1136/bmj.e3056.
- Restless legs syndrome; NICE CKS, March 2015 (UK access only)
- Allen RP, Picchietti DL, Garcia-Borreguero D, et al; Restless legs syndrome/Willis-Ekbom disease diagnostic criteria: updated International Restless Legs Syndrome Study Group (IRLSSG) consensus criteria--history, rationale, description, and significance. Sleep Med. 2014 Aug;15(8):860-73. doi: 10.1016/j.sleep.2014.03.025. Epub 2014 May 17.
- Garcia-Borreguero D, Ferini-Strambi L, Kohnen R, et al; European guidelines on management of restless legs syndrome: report of a joint task force by the European Federation of Neurological Societies, the European Neurological Society and the European Sleep Research Society. Eur J Neurol. 2012 Nov;19(11):1385-96. doi: 10.1111/j.1468-1331.2012.03853.x. Epub 2012 Sep 3.
- Scholz H, Trenkwalder C, Kohnen R, et al; Dopamine agonists for restless legs syndrome. Cochrane Database Syst Rev. 2011 Mar 16;(3):CD006009.
- Aurora RN, Kristo DA, Bista SR, et al; The treatment of restless legs syndrome and periodic limb movement disorder in adults-an update for 2012: practice parameters with an evidence-based systematic review and meta-analyses: an American Academy of Sleep Medicine clinical practice guideline. Sleep. 2012 Aug 1;35(8):1039-62.
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Dr Mary Harding
Dr John Cox